Friday, May 30, 2014


May is Celiac awareness month and GlutenAway started a great campaign focusing on the good. In thinking about what I am thankful for, or what good has come of my diagnosis, I am more and more aware of who-got-it-wrong and the grudges I am holding on to. I can recall the name of every server and establishment who has mis-served me, companies with false/inaccurate packaging, medical professionals and friends who implied my symptoms were all in my head.

It is really hard to let go of shit like this.

I want to focus this month on forgiveness. I want to forgive myself for all the mistakes I made, and forgive others who have made mistakes that have caused pain. (I had a goal of posting this 4 weeks ago, so let's just say my goal of forgiveness is a work in progress.)

forgiving me
I think this is the hardest part, letting go of the dread and regret I have. In 2007, I waited a long time to go see a physician about my symptoms. I have been holding on to that "lost time".  11 doctors later, I still wasn't  feeling great and ugly cried in my bathroom after I found out my multivitamin I was taking--2 months after being diagnosed--was made with wheat starch. I was so angry with myself for not getting it right. (I could list a hundred of these little things where I feel I-should-have-known ___) I have been holding on to these wishes of retroactive knowledge, like somehow once we discover time travel I could go back and all of this pain baggage would be worth while.

I want to create the space to realize I have made a lot of mistakes and I have learned from them. I don't need to spend more time rethinking about these situations. I need to let go of the idea that I should have been perfect at figuring it all out, instantly. There is value in these feelings - I just don't need them all the time.

I have also been angry with myself for having honest-to-goodness normal reactions. I have been frustrated with my feelings of being left out at work functions; told myself that I should just be able to "not care" about being excluded or forgotten. I have tried to down-play my frustration with people putting crumbs in the one gluten-free item at a party, or tell myself it isn't really a big deal.

I want to be ok with feeling feelings. I want to know that they don't have to last forever, but that I don't need to dismiss feeling left out because being left out sucks. It just does. Ok see I said it, now we can move on!

forgiving others
It is really hard to forgive those who have wronged us: doctors who misdiagnosed, loved ones who belittled us, companies and restaurants who got it wrong. The closer we are to these painful events the harder it is to forgive. It is hard to acknowledge that mistakes and missteps are going to keep happening. There is power in the anger when things initially go wrong, but I am not sure I want to hold on to it anymore.

I know I have experienced a lot of medical negligence, but I don't need to hold on to being mad at the GI specialist who told me I needed to eat a fiber supplement derived from wheat. Was it bad advice? You betcha!  Yet, me being angry about it doesn't change what happened - me finding a new doctor did.

So for me, Celiac Awareness Month has been a lot of reflection on who I want to be going forward. Today I had a 25 minute phone call with a manager at a restaurant that served me gluten last week. At the end of the conversation I decided to open myself up to the option of eating there again. I am not saying I am going to go tonight, and maybe I never will, but I am feeling a lot better being open to the option than being full of hate and venom. 

Wednesday, May 28, 2014

it is all in your head

A few people have been asking me my thoughts on the new search study out of Australia. (And subsequent articles with inflammatory titles.) All of my responses have started with an audible sigh.

Bacteria existed before we had microscopes to see them. Just because we don't have a western medical test to "prove" someone has a disease/intolerance doesn't negate the illness, nor should it prevent her from trying an elimination diet. The media has offered a bizarre double-edge sword where people are simultaneously painted as irresponsible for not taking charge of their own health and belittled for trying alternative, non-western pharmaceutical options.

I am fine with a million more news stories clearly explaining that a gluten-free diet is not an effective tool for weight-loss. It is great if we continue to highlight that a gluten-free diet can cause nutritional deficiencies. But let's also include the fact that most of the processed gluten-containing foods are fortified with additional vitamins and minerals because they too are highly-processed and if you ate them all the ding-dang time you would have nutritional deficiencies. The difference is, instead of promoting the eating of more vegetables, food companies have added these essential vitamins and minerals into foods that normally don't contain them (or contain very little, or did contain them but where processed out).

I am also a big fan of more research; a lone study of 37 people in Australia does not conclusive make. So let's keep funding research, let's keep talking about alternatives to non-celiac gluten sensitivity/intolerance, but let's also keep these conversations grounded in the fact that there is a lot more we don't know.

When I joined's message boards back in ye ole 2007, shampoo and face wash was a hot topic. Some people were noticing skin and digestive reactions when using products containing gluten. Others chimed in that there was no research proving one could react to gluten if it isn't ingested through the mouth and that clearly these people were: hypochondriacs, liars, attention seekers, aka "it was all in their head". This cutting hatred and dismissal of people who were in pain, or just seeking information, was part of the reason I departed. I don't see the point in negating people's experience, especially if we don't understand it. And now there are a bunch of gluten-free body-care products and growing awareness that if you slather things on your face it is pretty likely you are going to get some on your lips and in your mouth.

I think what is the most interesting out of this week of everyone-becoming-an-internet-expert-on-who-should-and-shouldn't-eat-gluten is the fact that people are breezing by the fact that the Australian study posited that people were having reactions/issue to other things: FODMAPS. So if by eliminating gluten are eliminating what is causing you discomfort/symptoms/reactions... isn't that a good thing? If a gluten-free or better yet an elimination diet is the key or gateway to figuring out what is wrong and feeling better, isn't that the goal?

So yes, more research, but until then let's be more support of those who are trying to get well and stay well rather than drawing more lines in the sand.